“Art enables us to find ourselves and lose ourselves at the same time.”
― Thomas Merton, “No Man Is an Island”
Recently, I’ve come to realize (again) just how much being chronically ill has stolen from me, and not just in the obvious physical sense.
Little bits & pieces of me, of who I am, have been slowly slipping away into the morass of living with ME/CFS/Lyme, etc., buried under the avalanche of chronic illness, a little bit (or occasionally a lot) at a time, as I slowly spiral downward.
And then I found myself again, all the little missing bits, in the most unlikely of places.
The loss of physical function, of ability, is the easy part to see.
I can no longer ride horses, garden beyond a few pots on the deck & my beloved bonsai, or even make a trip to the grocery store without seriously overtaxing my body. Those long hikes in the Woods are long gone.
Less obvious to those on the outside looking in are the loss of the ability to watch TV or movies because of sound & light sensitivity & the damned migraines. I had have my favorite sci-fi & fantasy shows & movies, and I miss them, though they wait patiently for me on the DVR.
Perhaps most of all, I miss the ability to inhale a good novel, to luxuriate in a fantasy world of warrior women, magic, and quests to be fulfilled, or to travel backward into history & relive the ancient past. I used to read upwards of 150 pages a night of a good book, but I lost the ability to retain what I read, and so keep track of plotlines and characters, about 10 years ago.
But the Amazon warrior woman within, the myths & magic I love so much, reside within me still, I have found.
Rather than be pushed away into the fog and forgotten, they beg to be brought out into the open, acknowledged, and, even, nourished.
They are part of who I am.
Exploring more, I re-discovered the thrill of seeing a beautiful vista from a far-away land, a gorgeous garden, an amazing animal, an unusual and well done piece of art, and so much more.
And so I have found myself again, I have awoken from my soul’s slumber, thanks to that unlikely source I mentioned: Pinterest.
For those who don’t know, Pinterest is a highly addictive online “pinboard” site, where you can create pinboards – collections – of images of things you like, and keep them neatly arranged in as many boards as you like. You can “follow” people who share your interests, and browse their boards, and repin what you like to your own boards. Most of the pins lead to websites, often of interest, too.
To be honest, I joined Pinterest because I saw friends joining, and didn’t really expect much to use it.
But then I discovered the world of imagery that resides on the web, the treasure hunt that is Pinterest, finding people who like the same things I do, and began luxuriating in the glorious artwork & photography the way I used to do with my reading, tv and movie watching, and travel.
During a bad migraine day, of which there are many, I barely feel like moving, and thinking is terribly difficult. About the only thing I can do at such times is to immerse myself in the fantastic art & images of the divine, creative DIY ideas, magical homes, forests & sacred spaces, found on Pinterest, all while barely budging from my pillow, on my smartphone.
As I collect and categorize, I am both losing myself from the pain of the migraine & drudgery of another day of “chronic-ness”, and also finding myself, the parts so long buried & lost, hidden away. But still there.
Buried, but still alive & well inside my heart & soul.
It’s been six months of pinning now, and I’ve found it to be an interesting & invigorating process, both spiritually & emotionally.
Hidden anger & grief has risen to the surface to be dealt with, as I see things that remind me of The Before Times, of things I used to do, places I wanted to see, but now can’t.
I thought I was over that aspect of this illness we call ME/CFS, over the loss of so much that was a part of my identity.
But seeing some of these images, these visions of the Past and hopes for the Future, served as a reminder to me that grief is a process, a spiral, not a circle – we don’t go through the steps of the circle and be over it.
Instead, we go ’round and ’round the spiral of grief and anger, mourning the loss of Life-As-We-Knew-It, and with each turning of the spiral, the grief in our hearts heals a little more, slowly, ever so slowly, fading away…
As I’ve wandered the spiral of grieving for my life, I’ve found Pinterest to be invaluable in renewing my hope and fueling inspiration.
Creativity has budded, and begun to flower.
Images and how-to’s fill my Creativity board of things I know I can make and do, albeit very slowly. I can revisit and refine what inspires me, as new pins are found and pinned, and not-quite-right pins are removed. They remind me that:
I can still create. I can still make beautiful things.
Another board reminds me of my deep connection to Nature, and is populated with images of wild women and wild places, prompting the sleeping wildling within to awaken.
With every visit, the fires of inspiration burn brighter.
Once upon a time, I had my very own, very large, herb garden, with just about every herb, medicinal and culinary, you could have. But for now, we have the Woods, some pots on the deck, and dried herbs that can be purchased.
Pinterest has re-kindled my interest in using natural ways for healing. The internet is full of tons of information on using herbs & foods for healing, and my board is a great way to organize all that info – and encourage me to try it!
When things are very bad, physically, I can drop myself into the sacred imagery, fantasy art, especially lovely places, or beautiful wildwoods that populate my boards, and hide myself from the pain & distress. I can distract myself from the boredom of living a life filled with chronic pain & exhaustion by going treasure hunting – for new & wonderful things to pin.
It is a refuge, a respite, and a renewal, that I never expected, but am very thankful for.
To see my entire collection, please visit me on Pinterest ~ and if you’d like an invitation to join, just let me know (it’s free).
Wolfdreams.... 
Like isn’t enough, I LOVE. I’ve used Pintrest too and I’ve used it mostly at night, it relaxes me so much. If I’m worried about something, it distracts me with it’s beauty, and yes, I still see the art work that I used to visit at the Museum of Modern Art, right on Pintrest. It’s funny I never would have thought you would be on it but I am so glad that you are. I will look for you, my friend, Ash, I feel happier knowing you also get joy from it. Hugs and love, Laurie
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Pinterest is fascinating in that there is space for people with all kinds of different interests, from high fashion to recipies (lots of gluten-free ones), spirituality to cars to… anything! It’s so affirming to find others with similar interests.
I’m glad you are on there, too, Laurie, and will look for you, too!
Happy New Year, and much Love!
Ash
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I looked for you today Ash but unless you are under a different name, I couldn’t find you. Please try and find me. It’s a very soothing thing to do, I find. It teaches me a lot about myself when looking back at what I have pinned. Much cheaper and nicer than therapy!! Love and Hugs, Laurie
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You can click on my profile above in the post, Laurie. I’m under Ash Wolf. I’ll look for you, too.
And yes, it is both soothing, and rather like therapy. Sometimes I find a photo just very arresting, and have to stop and figure out just what it is that draws me to it. I need to do some board re-fining, and thin out some of my early pins. Seems like there are people who pin every single pin that relates to their category, but I don’t want my boards to be like that – I want them all to have meaning, and be the best representatives of their topics. But I was very “pin happy” originally, and need to fix that!
Goodnite & Sweet Dreams!
Ash
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Hi Laurie! Just a note to say I am on Pinterest too. Long periods without checking in there, but hope to connect with you. I have a board with Ash, so you need to be on that one too 🙂 I think it’s called Dog Love. Hugs to you…
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Thanks for sharing this. These alternatives are so greatly needed. I’m discovering that Words with Friends on FB is taking the place of the avid reading I used to do. It allows me to engage my brain for very brief periods of time and if my mind wanders, I dont have to worry about the plot line or characters. I have a Pinterest account somehow, but havent used it much.
I’ll try to follow you.
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Thank you for commenting, Patricia! I have several friends on facebook who do Words with Friends but I’ve yet to give it a try. Perhaps I shall!
And you’re so right – this is such an isolating, limiting, life, and we have to find as many things as we can use to help us cope. I don’t know what I’d do without my online community of fellow patients.
*hugs*
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Awesome post! I bet there are people at some University studying about how the Internet helps people with Chronic Illness. Well, come to think of it, I know there are. UCLA most likely.
While living in Asheville, I discovered an organization (go figure, I can’t remember the name of it) that was created in the 1980’s (I think) around the time the Disability Act 11 was enacted. (I’m challenging my memory way too much and don’t have time to research this. In the ’80’s, there were amendments to the original Disability Act and I believe, a new one put in place).
One of the main things the Center did (The Center for… maybe the rest will come) –was connect people with disabilities to the internet.
They had a large room full of computers, volunteers re-manufacturing them and others who trained people, like me, how to use a computer. They set everyone up with a home connection. The price was 8 dollars a month, unless you couldn’t afford it, and you could call in to tell them.
They had Peer-to-Peer services, which is a great thing, I’ve learned, in almost any service relating to a health issue. Finding people who know what you are going through and can relate is one of the most basic parts of being human.
You have shared in a beautiful and moving way how you benefit from your online experiences and connections! I think you should send this for submission to a magazine or newspaper.
Every paragraph I read sparked a new thought I wanted to share.
Like your Warrior Spirit, the Woman You Are, what I have learned and know intuitively seems to be intact, even with all the stuff that comes with chronic illness. Having a connection to the world, and people who I can communicate with about the reality of life with ongoing health issues, and then have that turn into us sharing the things we see that are beautiful or interesting to us, is a great blessing.
Thank you, Ash, for your writing and sharing with the world. It is also nice to hear from you on WordPress again! I’ve missed your posts.
Wishing you a good day and hope to be on Pinterest more often so I can share in the things you love!
Hugs, Love and Doggie Kisses xoxo
Michelle.
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Hi Michelle!
How cool, that you got to be in such a new thing (then) as the computer training & networking! How very far the use of computers and the internet has come! And it is so very vital to so many of us, keeping us connected with others who understand what only other patients can understand, and fostering such deep & lasting friendships. I’m so thankful for all that it’s given me.
Thank you for your kind words about my post. Truth be told, I started this post in May, and have been tinkering with it ever since! It’d been too long since I’d posted something!
I need to spend more time working on the boards you invited me to participate in. I wasn’t sure exactly what your vision was for them, and didn’t want to step on your toes. And, too, sometimes I think I will work on them but then wind up following an altogether different track, as one pin in my feed leads to a new person to follow, who leads to someone else, who leads too… but that’s part of the beauty of Pinterest, getting lost following the tracks & trails of others who have similar interests.
Many hugs to you, and sending all my Love!
Ash
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Hugs to you too Ash!
Yes, it was fun being a part of that organization. I wish they had one here, and truly, since this is the “Paris of the Piedmont” you’d think they would have one, and they do, but it is a tiny office with one person working in it over in Raleigh. Nothing like the one in Asheville, which held true to the core values that the original Center was built upon.
A little story about the Center for people with disabilities:
I was in college at the time (I went back when my son was 15) and my professor had encouraged me to go. My first time wasn’t good. The people in wheelchairs thought that they should get in front of me in the line for food. Well, I was about to pass out. This was before any diagnoses, so all I knew was I almost passed out while standing. Anyway, one woman hit me with her chair. I left, promising never to return. Then, I told my professor, who had had a stroke, recovered, and soon afterward became the school’s Director of Disability Resources. Oh, she was mad! I agreed to go back, and ‘stand’ my ground next time, explaining to the members there what invisible disability meant. Seemed as though this wasn’t something they had investigated. The professor/director made sure they did!
About the boards, please do what you feel like doing! I mean it. I love what you share, and when I do manage to log on to Pinterest, I love seeing if you have added something to my board(s)! Thank You Ash. You are awesome, and I agree too that it had been too long since you posted 😉 I wish I too could finish some drafts. I hope to write more frequently this year.
Lots of love and many hugs,
Michelle.
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